National Disability Insurance Scheme Amendment Submission
Attention:
Committee Secretary, Senate Standing Committee on Community Affairs
Submitted via email
community.affairs.sen@aph.gov.au
I welcome the opportunity to submit regarding [NDIS] Securing Future Generations Bill.
As someone needing supports but abandoned locally/state/federally, my situation reflects many Australians’ lack thereof regardless severity impact!
This bill must be amended before passing as it’s too far-reaching & lacks scrutiny! Consultation should last at least one month per Australian Government Guide policy analysis. The short timeline impacts me due energy-limiting condition making timely submissions impossible. This shows government neglects disability rights. Recommendation: Extend submission deadline from two weeks for best practice minimum of thirty days.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108 going back to Parliament.
The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written. The issue: The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about supports and funding.
National Disability Insurance Scheme Amendment
Submission 2108
ethical right to remove our right to review decisions? I argue that you do not; removing such rights would constitute an undemocratic action.
Recommendation: Require “no harm” safeguards ensuring no current participant loses access unless equivalent alternatives are provided prior to any exit decision while preserving independent reviews during unscheduled reassessments.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Recommendation:
Do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.
Unvalidated functional capacity assessment tool risks misidentifying need
The issue:The Bill shifts assessment from whole-of-person consideration to a single eligible impairment(Schedule Part3). Read togetherwiththe eligibility thresholdsin Partsand9,the toolusedtoconductfunctionalcapacityassessmentsmustbesufficiently identifying whethera personmeetsthethresholdforthatsingleimpairment.The namedassessmenttoolisI- CAN.I-CANrequiresvalidationtosureitwill sufficiently identifytheneedsofallpeopledisabilityincludingthosewhose needsmaybefluctuatingorepisodic and maynot be captured throughapoint-in-timeasessment,and ensure itisculturally appropriateFirstPeoples disability.How this affects participants:Iftheadssessmenttoldoes nota ccurately capture then full extent of aperson’s disabilit y includingneeds that fluctuateorvary over time,aparticipantmaybe found ineligibleorthavehissupports undercounted ,witno guarantee theresultreflectstheiractual experience.ALL tools used by government must include complex things such as Post Exertional Malaise (PEM).Because what you see me for one hour while filling in generic form is not representative my life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Open tools such as I-CAN to questions and peer review. In my former job I asked to interview the researchers involved in making it and got redirected to the government. Why are you scared of questions? Are you hiding something? Also in my former job Minister McAllister said that the government was working with disabled organisations to ensure I-CAN is accessible and includes things like breaks. And yet I’ve not seen one disability group reach out to its members to talk about what accessibility they need from I-CAN. Was the Minister lying? When will these consultations take place? Will it be genuine consultation, or performative consultation like for this bill? Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.
Supports cut before replacement system is ready The issue: From October 2025 onwards, he
government announced funding reductions by ⎧ per cent on social participation supports and civic community activities daily activities by Ⓓ per cent for all participants. These cuts were implemented through ministerial instrument power Schedule Part . Foundational Support intended fill gap no confirmed implementation date operational How affects participants Supports help connect their community build skills maintain independence may be reduced anything exists replace them leaving carers families greater responsibilities additional support helps stay visible connected safe If you reduce category so person currently NDIS cannot get medical appointments how meet new requirements try everything needed scheme Shall we teleport appointments This cut cruelty callback ugly law days Recommendation Require that no reduction in community participations building takes effect until Foundational Supports fully operational adequately funded demonstrate able meeting needs who lose NDIS supports Furthermore ensure Foundational Support more than informational website general foundational supports generic group session targeted founda tional supports People still need ONGOING INDIVIDUAL SUPPORTS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Communication Crisis / “not contactable” rules
We are not staffers in government. We are not available 24/7. Plenty of disabilities mean we cannot communicate at will. I already hear from people on the NDIS that you completely ignore communication needs and treat them as wants. This is already showing the governments lack of literacy in communication with people with a disability. To add the thread of cutting people off to your already inappropriate processes is nothing more than pure cruelty for the sake of making your precious budget look better.
Administrative burden
We are not unpaid workers. Provide skilled paid staff to negotiate the way through your messy disorganised, badly run department on our behalf. Or listen to what people told you in Estimates last year, which was that if you want to improve the NDIS/NDIA, actually follow your own rules and policy and procedure. That would help us a lot.
Automated decision-making
Is a scourge on the planet and doing this while cutting off the ability to review or appeal or otherwise fight back is another unethical action on behalf of this government. I ask the committee to consider my lived experience when reviewing this Bill.I ask the committee to respect lived experience as more valuable than a political wish to save money.We are not your budget line items.WE ARE HUMANS WITH LIVES AND RIGHTS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Appendix:
Posts I have written in the past that explain more of my viewpoints on government actions, inlcdinghowtheyarerelevanttothisBillandthissubmission.
Stop shuffling, start designing
Relevancy: The intersection of NDIS and Foundational Supports
NDIS and foundational supports come up a lot in my life, mainly due to my job.AndI’mkindofsickofit.NotonlyislifeundertheNDisonlya realityforasmallpercentagepeoplewithdisability,Ifeellikewere rapidlylosingtheadportunityfoundationalsupportsbeactualusefulservice.The focusatthemomentseemstobeonshufflinngnotdesignin Whatdoimean?Foundationalsupportssessionsembetobefocusingbudgetshuffle.EgtheonattendedwaseffectivelykickingNDkidsoffofN Disonto foundational supportsshuffle budget expense from federaltostateWhatabout all people need disability supportrightnowcan’tget NDIsBecausethat’sactuallymostusMy fear is shuffle will endupno positive outcome those not currently within system. That shuffle eg ND kidsfromfederal tounable include then rest get lung capacity scream “what about us”, state say it too hard/expensive/whatever other convenient political excuse they pull out butts Other bureaucratic roadblock can foresee around permanent severe State tell you have permanentseveredisabled thereforeneed the NDIS.NDISES we see community refuses things (eg MECFS) as permanent serious wonder many caught argument All for shuffling some f&*@ing money.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
I don’t know about other people but I don’t give a flying f%^k which bucket of money my supports come from, and if they’re called NDIS or something else. I just need the f%^king support. Actual support, not capacity building or peer support or self advocacy or other faux half-solutions. I need someone to do the things that I cannot do.
I’m still recovering from the flu and pretty weak, so I hope these words from my clogged up brain make sense.
Original post: https://normalness.com/2025/07/24/stop-shuffling-start-designing/ The state will take care of that Relevancy: You assuming the states will take care of us when you reduce the number of people on the NDIS. The problem is, the state won’t. You’ve seen the issues you’ve had trying to get non NDIS supports. Others I know have been told even more ridiculous things by the same supposed support services.The problem with the shuffling that’s not going on to save the federal government money is that there’s an assumption that the state healthcare systems are comprehensive.They are not.If you’ve ever looked at referral criteria for a specialist in your health district,you’llhave seenthings like “{district} doesnot treat {condition}“. Thisis very ,very common.It meansthat many peopelwith mysterious* chronic conditions don’tget any medical treatment.Didyouknowthatsystemhealth can say“nah,Idon’tlikethat condition,nottreatmentfor you”?Thenyourhealth gets abandoned unlessyoun’re independently wealthy enoughto see multipleprivate specialists.Andevenifyouareindependentlywealthy.you.may still noreceivecare if yout’re house or bed bound.
National Disability Insurance Scheme Amendment Submission
- mysterious does not mean that the conditions are not real; they usually indicate medical malpractice due to outdated opinions. Side note:
- People fund ‘evidence-based’ treatment but ignore research on certain conditions, such as those caused by rich upper-class individuals where science has stagnated decades ago; critics argue “science isn’t neutral.” So… if NDIS excludes chronic illnesses because they’re non-disabling or no specialists seen… does our support come? The answer being ‘no’ creates significant issues. Pending funding agreements between federal & states for aged/disability/health care must ensure every condition treated without exclusions.
National Disability Insurance Scheme Amendment
Submission 2108
Your medical team expects you to be on top of everything.
- Your physiotherapist expects you to do stretches and exercises perfectly every day,
- Your GP may lose interest if you don’t get better; you never know how anti-chronic health issues will cut off medications without healing; psychologists expect self-awareness at any time using tools for happiness. And that’s lucky enough access is available! The next level comes with employment: doing well during flares, scheduling appointments outside working hours even public healthcare when uncontrollable. Avoid sick days due chronic conditions since they’ll run out before acute ones hit office again. Plan flare-ups away from annual leave because being greedy means too much downtime. don’t have bad pain weeks where tolerance wears down especially bureaucracy. everyone has their Try Tank variant: competition isn’t helpful or thankful someone else worse than me (but not wanting anyone having things worse). What empties your try tank might just a blip in daily life.
Pre-Budget Email Relevancy Government behaviours towards disabled people Context written before Butler’s speech at the National Press Club Today I was reading news saw politicians claim federal budget wasn’t set yet. So figured why email relevant minister tell them what expecting behavior hasn’t been up standard recently It s best work past month personal life advocacy doesn t need perfect Just some capacity Feel free use my letter template Maybe remember angle forgotten include Who knows who reads stuff but whatever tried all we can do
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Dear Minister Butler,
I am concerned about the level of negative rhetoric that the government is promoting about disabled people, and potential cuts to disability support in the upcoming budget.
Given that it is your portfolio, you should know that overall, it is only a small percentage of disabled people in Australia who have access to the NDIS. If anything, the NDIS should be being expanded to ensure that all people with a disability have access to equitable supports. The system does not support everyone. Many of us are non NDIS users not because the system claims we are not disabled, or we’re not the right type of disabled. Generally, being not the right type means our disability comes from a “health condition”, as for some reason, your government deems these non disabling. These are also conditions which are primarily faced by women, and are under-researched. Neither of these factors should exclude us from supports, and yet they do. Language recently used by the ABC also seems to uncritically reflect government stances. In a recent article titled “Australia’s ‘lucky country’ mantle has slipped —andwe’renothappyaboutit”theysaythatoneofyourpreferredresearchfirmss“foundtheNDISwasthegovernmentspendingprogramseenbyAustraliansasproducingthesleastvalueformoneyforAustraliantaxpayers”.Myquestionis—whydoestheonopinionofthepresumablymostlynon-disabledsurveyedmattersmoretoyouthanthonotionofthedisable?MostAustraliansarenotiniterateonthecomplexitiesoflivingwitha(disability,sototheiropiniononwhatisthavaluencannotbe…valuable.Again,asyoushouldknowgivenyourportfolio,theRoyalCommissionintoViolence,Absuse,NeglectandExploitationofPeoplewithDisabilityshowedthatoneofthebiggestbarriertoinclusionandrighsinaustraliaistheattitudenofofdisabledpeople.Yethereyoutherehavingsurveyledlikelyprimarilynoedisabledpeopl,andyouaraplacingtheiruninformedorpinionsofhighervaluethanthatoflivelexperience.Youhaveanoportunitythisweektoshowtha,publicservant,youareaabletorepresentandsupportpeoplewithe disability.IhopethatyonationalPressClubspeechthisweekissfullofsupporfortheneedsofdiscapabledpeopleinaustralia. Ihope that the budget is being created without increasing hate for disabled people but with then knowledge thbothNDIS and Foundational Supports need to be wide reaching program that truly support peoople wih a disabilty. I look forward tseeing less hateful rhetoric on disabled people coming from this government anda budgetthatsrespectsourhumanrightstoaesssupportandsociety.
National Disability Insurance Scheme Amendment
Securing the NDIS for Future Generations Bill 2026 Submission 2108
Original post: https://normalness.com/2026/04/20/advocacy-pre-budget-email/
Why means testing disability support is a bad idea
Relevancy:
for when you next have a bad idea to save money Recently in the news, a person suggested means testing disability supports. This is a bad idea, atnd I’m going to share some reasons why this post. Feel free add your own comments below.
Costs
Disability expensive costs more live if you are going mean test disabilities then cant be judged by non disables needs Research shows need income than non disable people. If disabled were based on something existing eg centrelink tests would further poverty than non disabled subjected same limits.
Working
Not every can work not every who works should keep working often limited ableist employers entry level jobs recruiters and prospective run away from once find out we’re disabled. Employers won’t accept they increase their skills relating with disability expected consult where other types of consultants get paid Once someone finds us assume only work others disabled people. If possible generally hide being employed accommodations denied because it’s an non disabled literacy around deciding what reasonable”.
National Disability Insurance Scheme Amendment
Submission:2108
Disability supports often help people access work for the first time in their lives; nearly every quarterly report from NDIS has had case studies about this. We’re seen economically burdened if unable or needing assistance, suggesting employers should accommodate us rather than avoid it; extending inclusion beyond mere appearance is crucial.
National Disability Insurance Scheme Amendment Submission
Means testing disability right now is putting the cart before the horse. And when that happens in the disability sector, disabled people die. This is not hyperbole, this is reality.
Just think: All links here come from real-life experiences! These online stories barely scratch surface of what’s truly experienced daily—disability diversity means countless perspectives exist on supports needed!
Original post:https://normalness.com/2026/04/11/why-means-testing-disability-support-is-a-bad-idea
Foundational support via Emerge
Relevancy: Please listen patients & organizations about actual foundational support needs you haven’t created yet. In late ’24 some orgs surveyed creation of these foundations. As someone needing them without getting any, some surveys filled to share my thoughts (this report). Excited reading report because I felt like someone was saying exactly how I feel—but then realized person quoted me ( doesnt cite names fine). Quoted executive summary says:
National Disability Insurance Scheme Amendment
Submission 2108
need won’t suit every need. I hope people appreciate that the latter is the spirit in which I wrote this statement; it’s something my brain came up late at night when doing survey, since rewording would be uncomfortable due risk misinterpretation: to find words/example later on was just what my brain thought about during survey time. It became clear how much hated being forced into individual capacity building approach during completing said survey; executive summary reflects it too—many respondents disagreed government focus thereon. To honest can remember whether next one mine or similar thing said before. either way highlighting here because non-disabled telling us what must desire pisses me off. normalizing social interaction incredibly difficult to point impossible for me, making concept of forcing participation crash dangerous: “Any attempt build my capacity tends result backwards steps.” Participation community (desirable) always detrimental functioning.” This definitely me though many others probably near identical thing: “Don’t teach do things, someone else needs them done” And like report puts it: “For many skill-building seen inappropriate assumes deficit they don’t have”. General important point largely ignored by healthcare system most organizations includes implementation COVID-safe practices particularly settings ensure individuals compromised health severe symptoms access care while minimizing additional risks. Don’t know why governments seem unwilling understand disabilities disabled people want increase capacities energy-limiting conditions maybe don’t peak body RACGP basically call crazy instead invest actual research condition Original post https://normalness.com/2026/01/12/advocacy-foundational-support-via-emerge/
My submission
Relevance:
if you want us to try everything before accessing the NDIS you need to fix the associated problems with the health system to support us to try everything. My suggestions are still largely the same in 2025 as they are addressing systemic issues that need changing. At the time I submitted it anonymously (number 185) as I was still very much hiding my needs from the world.
Specific problems and actions the government could take
Costs
It is morally wrong issue medical billing Australia patients have full amount cash up front appointments Even if gap small there far privilege commentary about what means concerns affordability this area unemployed welfare As example Under chronic management plan must bank account pay physiotherapy extras coverage only cost Why private business afford gap only flow but government totally back front Suggested Action: change burden costs so patient has ONLY any “gap” amount their bank account ### Access Medicine Lucky compounding chemist within kilometers home standard long covid medications can accessed at a compounding store This new development previously husband who doesn’t drive had compounded medicine leave work early drive industrial collect limited opening hours If location nearest would not be able access compounded PEM symptoms weeks after each trip Suggestion Action: ensure accessibility of all kinds medication population ## Access – Physically accessing Medical Care
National Disability Insurance Scheme Amendment
Securing the NDIS for Future Generations Bill 2026 Submission 2108
Through the long COVID Facebook group I have become aware of official (public) and unofficial private) long COVID clinics around Brisbane. I cannot access any as they are too far away from me, travel more than few minutes leaves two week flare.
Public transport is often not suitable factors such:
- Walking distance nearest mode walking end stop actual destination; Unreliable services risking appointment missed; extends duration home which worsens symptoms extend PEM; lack mask requirement leading unacceptable further exposure.
Suggestion: Pay cab other private transportation costs medical treatment for long COVID patients. do reimbursement system call payment impractical lower incomes.
Relevancy Medical care
At least one private clinic in area seems treat cardiac respiratory type symptom range included). some states do those types so even if there was long COVID catchment likely provide no support.
Action Suggested: Include ALL symptoms long COVID clinics ensure telehealth visits housebound people who are housebound include telehealth, home visits to those who are housebound.
Accuracy Medical Care Due failing update guidelines Cognitive Behavioural Therapy Graded Exercise Therapy studies being flawed dangerous ME/CFS patients risk every time practitioner prescribe out date harmful treatments.
Immediate Action Required Update reflect accurate current information remove GET CBT high quality educational campaign regarding this removal for medical and allied health staff. Access – Government payments
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Permit people to access non poverty levels of government payments. It is emerging that radical complete rest can be powerful method combatting Long Covid, is impossible if you must work. suggests:
- Ensure temporary illnesses permitted DSP access; it’s new evolving condition old rules don’t suit will continue source harm. Action: Remove partner income tests limit mobility leaving partners. Raise payment Henderson line so not live poor this won’t assist health conditions. in Indoor spaces suggest legislate air quality standards lessen exposure risks indoor environments. antivirals disconnect initial rollout vaccinations who can access antiviral suggests allow long COVID patients subsequent infections where contraindicated. Work limited housebound cannot commute companies view working from home treat frivolous critical accessibility requirement foreseeable future about jobs apply step back get job keep roof over head at risk homelessness suffering career lack decisions made allowed terrible virus ripped through community.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Access – Safe healthcare
I caught covid in an emergency department because the only space to sit turned out to be near the covid positive patients. At no time did staff tell us they had separated covid positive and non-covid patients. Their neglect on some basic logistics that didn’t require medical skills, just common sense, means I am now suffering. suggested action: to access measures such as ventilation standards high quality masks so at risk people do need a first or subsequent infection order continue systemic Issues Many of items brought up here my experience from long but also systemic issues others chronic conditions disabilities experience.suggested action Respect energy physical mental emotional submit information inquiry ridiculous requirement submission must not published somewhere else unique this claiming can’t share stories everywhere bureaucratic processes adapt those submitting whims fully abled public servant doesn’t understand difficult is.suggest Action Pay patient appropriate consulting fees chronically ill disabled have amazing lived which valuable getting real source issues underutilised due inaccessible workplaces accessible work environment contribute improving government services are charity cases should expected constantly give knowledge free.target Foundational Supports Advocacy relevancy: kicking off NDIs other systems don’t exist yet missed opportunity properly support health system agreements states.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Concerns About Plans For Targeted Foundational Supports
Recently became concerned about plans for Targeted Foundational Supports. This is not new but just specific concerns outlined things inthe past.* The concern was mainly raised through application form this focus group because read implying that Targeted Foundational Supports may ONLY Thriving Kids.
The image description reads: a yellow box text reading The focus groups going be talking two different topics please select which topic would like focused if selected can select more than one General foundational supports -supports disabilities outside NDIS(Targeted foundatio nsupports-children-families-disability-outside-of-the-NDIS). If are persons receiving no support despite my efforts and efforts*,and knowing very little of those getting NDIS*(a small number)then
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
you’ll understand why I’m getting concerned. I need supports. Targeted supports are pretty much the only hope I have left.
I emailed the people running the focus group. I applied to be on both groups because while I don’t believe general supports will be of value to me, if targeted supports are going to be only Thriving Kids, then that’s of zero use to me. More importantly, others who are directly impacted by/who will use that service should be part of that focus group (unlike what happened with QLD consultation). I asked the focus group organisation if the government has changed the scope of targeted supports. That was about ten days ago as I write this. I never heard back.
So I collected this information, my concerns, tried to fight the brain fog, the fatigue and headache from painsomnia, the stress I’m under right now due to the hospital requesting unsafe tests that also have challenging accessibility, and I sent it to two organisations who have a focus on systemic advocacy. I hope what I wrote to the orgs makes sense. I hope this post makes sense. But if it doesn’t, oh well, this is the best I can do right now with the capacity I have. The main thing for me is that right now, when the states and federal have not agreed on hospital and disability funding, we have a window… you see, if targeted supports are going to be ONLY Thriving Kids, and if we don’t really know this formally, “out loud”, then the budgets states receive will be set to only cover Thriving Kids. We should use this window of not-yet-agreed funding to make sure that targeted supports will be more than just Thriving Kids, because I think it’d be easier to fix this situation now rather than beg for scraps later. I’d love to be completely in the wrong about this and feel confident that Thriving Kids is just an initial focus, and that Targeted Supports will help the tons of people like me who are currently abandoned by both NDIS and state governments.
I really do mean it when I say I want to be wrong, by the way. That is not hyperbole. I’m happy to be wrong. I’d be f%^king delighted to be wrong, in fact. But my faith in supports has been ruined over the past few years of survival and I’d rather be wrong than silent and correct, and miss an opportunity to raise something before it becomes a problem. Original post: https://normalness.com/2025/12/02/targeted-foundational-supports-advocacy/ Tips on codesign for organisations Relevancy: targeting everything you’re doing wrong right now with the consultation for this Bill.
National Disability Insurance Scheme Amendment Submission
As you know, I have thoughts and feelings about codesigning methods that focus on organisational aspects rather than individual-based approaches.
Below, my italicised comments represent reflections from a paper titled ‘research’ authored by DANA:
Allowing Non-Ableist Forms Of Expression
Traditional forms of research can feel limiting because they don’t accommodate how disabled individuals prefer communication styles; co-design methodologies should recognize diverse ways instead of adhering strictly to verbal interactions which may exclude those who rely more heavily on asynchronous means like email.
This resonates strongly—organisations demanding lengthy sessions while rejecting any form other than synchronous interaction seem exclusive towards certain types of disabilities without considering inclusivity beyond surface-level engagement!
Closing The Loop: Sharing Benefits From Research
Community partners including First Nations ones highlight burdens placed upon people living with disability when repeatedly sharing personal experiences without clear pathways for their insights being utilized effectively—or even driving change at all…
I’m not alone here! This issue isn’t limited just within disability work but also applies in poverty-related contexts where reliving traumatic events becomes part-and-parcel before making complaints or seeking changes. Yet organizations often demand these details too - what’s the cost? (All costs considered.)
Distribution Of Resources Time/Money/Data
Despite common practice among researchers offering compensation during participation studies, agreements frequently impose ableist expectations regarding time and resources allocation specifically targeting persons with a disability requiring adjustments due to differing needs compared non-disabled counterparts.
Reasonable accommodations must be applied.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Sharing data: A mutual exchange
Many community partners expressed frustration with research that takes years to publish, which is when the opportunity to use research to influence policy on systemic issues has passed.
Another one that I’ve found lacking; once it was offered that I could read a paper later, as if that was the same as contributing to it. Nope, reading a paper later is NOT contributing and having my voice heard!
Original post:https://normalness.com/2025/11/07/tips-on-codesign-for-organisations
NDIS support needs assessment process feedback survey Relevancy: Relates to the elements of the Bill which are plan creation and assessing/reassessing disability.
Do you have concerns about the creation of a new NDIS support needs assessment process? Please provide details.I am concerned the assessment process will not be made by, run by etc people who understand what it is like to live with disability. For example, I’m concerned about persons who are not literate in disability deciding we can just try harder ,when we cannot . Or our needs are wants because they don’t know what makes them need.
Do you have concerns about introducing an assessment tool based upon the I-CAN assessment tool ? (tick one) If yes please provide details. The tool is too much boxing us into presets that has yet been adapted tested rigorously for use within context particular first users subjected getting inappropriate assessments that this tool will inclusive fluctuating disabling chronic illnesses.
How could NDIA ensure fair new support needs assessment processes for those living disabilities? Ensure literacy at center decision making
####### Should allow collect evidence supply own reports tick one if yes please provide details. Concerned cost funding such reports most knowledgeable practitioners Australia policy writing reports leaves me up paddle even submit won’t read wont
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
be respected, will be seen as biased, or will otherwise be prioritised lower in the information hierarchy when used to make decisions. Reform of the public health system needs to be included for equitable access to skilled medical professionals.
What needs to be included in the new support needs assessment process to ensure it captures the diversity of people’s support needs. Please provide details. The problem I have with details being included is that there is a preference for evidence based support. While on the surface this is admirable, there is a problem because the government assumes evidence exists. For marginalised and underfunded and historically neglected conditions such as MECFS, we don’t have the type of solid evidence base that other conditions have due to the pressures inflicted on the research due to a few select people psychologizing the condition.I don’t know what the solution is, but this gap in being able to meet standards of evidence needs to be managed and acknowledged because expecting individuals to overcome systemic and historical biases is not reasonable.Trust disabled people to know their needs when there is a gap in evidenced-based suggestions maybe? What should the next stage of the support needs assessment process co-design look like as it is created and the assessment tool is customised for the NDIS? Please provide details. Co-design is when people work together to plan something new and can include things like testing with different people, surveys, feedback forms, interviews and focus groups.I don’t mind what it looks like so long as it incorporates all communication needs. I do mind if they ask and ignore us, and personally feel government should be invoiced by disabled people when they ask us for this information and then ignore it, because i’m tired of the consultation being fake.Do you have any more feedback or ideas on what would you want the support needs assessment process to look like for you? Please provide details.The assessment needs to include people who cannot communicate, those who only use asynchronous communication methods (e.g., AAC), need assistance from others such as speech therapists or sign language interpreters; also includes those whose ability fluctuates significantly throughout each day requiring breaks between questions.Any other comments on NDIS support needs assessments?
National Disability Insurance Scheme Amendment
Submission 2108 I support reducing the financial burden of paperwork. Original post: hhttps://normalness.com/2025/10/24/ndis-support-needs-assessment-process- fedback-survey/
If we’re a “burden” why won’t you help us?
Relevancy: cutting NDIS supports won’t help us, an if you don’t care about us as humans twon’thelptheconomy. Recently an article was publishedbyABCnewsabouthowchronichealthconditionsare impactingproductivity.Naturallythewordburdennwasusemultipletimesintheadvise.I assumethisisaneconomicframingthatreliesona charityand/ormedicalmodelapproachtodisability.Butthelargestproblem Ihavewiththisarticleisthewhatsharedonsocialmediaatthetimeitcame out.Theglaringgap.Therewasonementionofgivingsupports(includingfinancial)forpeople withtemporaryorpermanenthealthconditions.Health conditions are often disabling.We deservesupport.Im’sotiredofthedividewbetween“disabled” and “disabling chronic illness” that they governmentenforces.Ifyou’re disabledneed support thatsallshouldmatter. Im’burntout at themoment(havebeenformonths)becauseImignoredandsupported edismissed… all because it’sa chronicleillness thendisableme?It’sf&*king ridiculous.Ifwe’reaburdendragging the productivity of country down,why wontyoushelpeus Original post: hhttps://normalness.com/2025/08/17/if-were-a-burden-why-wont-you-help-us/
National Disability Insurance Scheme Amendment Submission
Is there still an opportunity to do foundational supports well?
Relevancy: You can make this not a disaster if you listen to disabled people. Recently in an interview for work I said “this can all be summed up by saying there’s still an opportunity for foundational supports to be an amazing service for Australians with a disability” (audio version here, transcript available). And technically speaking it is true, as long as they haven’t been designed already then there remains some room to improve them further but governments aren’t planning on doing so effectively, at least judging from recent events yesterday where fears around poorly implemented foundations are quite real. The codesign team mentioned something like fifty participants had met physically which could’ve possibly been training sessions; however such systems inherently exclude those who cannot travel due either to physical limitations or caregiving responsibilities preventing mobility access - many reasons why traveling isn’t feasible yet this significant reform requires exclusionary activities confirming concerns about inclusion being limited solely among able-bodied individuals. I’d also appreciate knowing whether anyone involved has energy-limiting conditions because of how often my needs have previously been dismissed by service providers and we would likely avoid similar experiences altogether should more input come directly into the design process. 86% percent don’t even possess NDIS support while very few actually do receive any form thereof despite its prominence within discussions surrounding disabilities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
Why am I concerned?
Because there’s an increase in rhetoric that i’m finding difficult to stomach. The irony is that those who REALLY need the NDIS have it; “The very characteristics of these people mean don’t require either depth or length over longer period” source.
The NDIS review website says targeted foundational supports are “for people lower level needs not eligible to access NDIs.” Unfortunately many us do need ‘depth and length assistance’ OR are ‘lower support needs’ AND don’t have access ndis. I’m worried ME needs ignored forced inappropriate services chronic health needs huge part community ignored diversity within same condition won’t be respected.The information & community all here ready make good system.I think government isn’t listening.And doesn’t want listen. Problem with this: Government adheres social model disability assumes once barriers removed fixed. Removing society’s barrier doesn’t remove everyone disabled absolutely can help removing always helps but means non-disabled now. When deciding removing a barrier they’re creating gap wouldn’t exist if listened consulted community claim consulting. is opportunity still doing well?Yes.There exists political will critical success. Original post:https://normalness.com/2025/06/05/is-there-still-an-opportunity-to-do-foundational-supports-well/
National Disability Insurance Scheme Amendment Bill Submission
My needs are not wrong; your service is wrong.
Relevance:
The text emphasizes listening to disabled individuals’ perspectives on their own lives rather than relying solely on bureaucratic decisions regarding necessary accommodations or services.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
I wish to make a complaint about the inappropriate nature of services offered under the Queensland Community Support Scheme.
Please firstly note that this is NOT a complaint about any staff I have interacted with. They have all been lovely, professional, understanding, and should in fact be commended for the compassion with which they do a difficult job.
This is a complaint about a government body deciding what services are appropriate for a disabled person.
My most urgent need is a mowing service. I cannot mow a lawn due to my disabilities and will never be able to mow a lawn. I was informed that the Queensland Community Support Scheme does not offer a lawn mowing service anymore. The most I could get is someone to mow a few strips for access, for example to the bins, mailbox, or washing line.
This would not suit me as I would breach my lease, local council expectations et cetera etc., by having an unmown lawn.
It was explained to me that their services take a capacity building approach. While I understand this is common in disability sectors, I cannot capacity build myself into mowing; it’s something different from how my disabilities work.
I don’t need someone to teach me how to mow—I just want them to mow on behalf of me!
A disability service needs to listen to our needs rather than dictate us regarding things we can’t accomplish ourselves! This has got to change—please let’s hear your plan towards listening out & supporting people like you who actually have these real-life requirements?
Please note: Due to my physical limitations, email contact only works best with me—not phone calls nor meetings whatsoever.
Kind regards, Vanessa Smith
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2108
The QLD Government response:
Dear Ms Smith, Thank you for your communication regarding the Queensland Community Support Scheme. The following is provided for your information: QCSS forms part of broader human services system; it provides low intensity supports such as essential yard maintenance but not intended to meet all aspects or duplicate other formal/informal mechanisms like NDLSI. For further details about testing Eligibility for NDIS please visit NDIS website.
National Disability Insurance Scheme Amendment
Submission 2108 If you require further assistance or have further queries, please reach out to Communities CCP Requests at CommunitiesCCPrequests@chde.qld.gov.au.
Issues:
The issues: Are huge. I particularly got upset at calling it ‘universal scheme’, bastardising universal design concept. NDIS’s ignorance in accepting small portion Australians with disabilities; state governments living dreamland where they take away disabled costs ignoring human rights completely under QLD government support lack clear example available.
National Disability Insurance Scheme Amendment Submission
You have to give more than you get! (But I can’t.) Everyone who doesn’t give, can’t get. (Way to exclude people who can’t give.) You have to be uncomfortable to be in community. (Being able to be uncomfortable is a privilege.) The discussions may have slightly different words or phrases, but the above has been the general pattern. And I’ve struggled with it. I can’t give. I can’t drive a neighbour to the airport. I can’t give this or… well, basically the entire lists of things that people say you have to do to be in community, I can’t do. I spend more energy than I have, than is safe, to take care of myself and manage my health. These discussions had bothered me for a long time, but the clarity on exactly what was bothering me came by a post on Threads. A user (not someone I follow, just a post that the algo served to me) said:
The difference between networking and community: networking asks “What can this person do for me?”, community asks “What are we building together?” My reply was: Thank you for sharing this distinction; the more disabled I’ve become, the more uncomfortable I’ve become with discussions around community because it always seems to be